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Anyone with Retroperitoneal leiomyosarcoma had a genomic analysis?
Sarcoma | Last Active: 16 hours ago | Replies (20)Comment receiving replies
@ctflyr hello I just read your message, how is your wife doing? I was diagnosed with rLMS on November 2024, tumor was removed in December 2024, with no further treatment. I have been NED and my next scan is in June. There’s a small nodule on my right lung that’s too small to test. The oncologist keeps saying that it’s not abnormal for people to have small nodules in their lungs but after reading your post, I can’t help but to feel a bit uneasy. How did the treatment work for your wife? Did she have any symptoms related to her lungs prior to the diagnosis? I hope it’s all well and I’m looking forward to hearing from you.
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@blessed08 Hello....not trying to be alarming, but my Wife's lung nodules were small...too small to treat or be concerned about...for quite awhile. I believe there were 3 initially shown on CT. They grew slowly however, and were monitored until they enlarged to a size that could be biopsied. She was still NED. By that time there were a number of nodules in different locations. Sarcoma was found in a biopsied nodule, so she started on Votrient. The nodules were "too many" by then to treat other ways. There were no symptoms leading up to the biopsy. We were told prior that the nodules were too small to treat, and they should just be monitored on regular scans. Her experience with Votrient has been good in that it has slowed/stopped nodule growth. That said, each person is unique, and will have their own course and results. If you're fortunate and the nodule you have stays single, you might be able to have it ablated, radiated or surgically removed at the appropriate size. Hope this info helps. Wishing you continued NED!!